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‘Just the way you are’

Five years ago today I read L his very first bedtime story. Here we are:

Ahhh, the glow of new motherhood. At the time this picture was taken, L was almost exactly 24 hours old and had already had his first major surgery. I was sitting on a padsicle, wearing gigantor mesh underpants and whatever random clean clothes a family member had grabbed to bring us to change into (as it happened, those random clean clothes were matching red gym shorts and gray t-shirts for both me and Z – adorbs!). And I had been crying for the better part of 24 hours, as you might possibly be able to tell by the swollen red horror show that is my face.

24 hours in, we were trying to wrap our heads around what was happening to us and clinging to any semblance of normalcy we could find. L had arrived suddenly, six weeks early, with a birth defect we had not known about previously, and had been whisked off to surgery where it was discovered he had lost most of his small intestine and would need another surgery eight weeks later. At this point he was still sedated and intubated, and I was overwhelmed with a new diagnosis and was being bombarded with unfamiliar medical terms and wasn’t sure if L would ever be able to eat anything ever and didn’t know what his future held, and was trying not to face the unspoken if he had any future at all part of that statement.

And so to cope, in the midst of all these things that were not okay, we had gathered some children’s books, and we were reading L his bedtime story.

I will be honest: I’m pretty sure Z picked Corduroy. I don’t think I even really remembered the story at the time, and I can’t imagine I would have chosen it over several others I was more familiar with. But I was physically and emotionally spent and didn’t have the strength to make a decision, and so Z chose a book, and I read.

I have struggled to explain the extent to which L and his diagnosis are completely separate things for me. I love L more fiercely and fully than I ever knew was possible, and at the same time I so desperately wanted to wake up from the medical nightmare of those first weeks and months that stretched into years. I have wanted out a thousand times over; but that is directed entirely at the diagnosis, the medical struggles and all the suffocating stressors that come with them – which are physically part of L, but for me have never been part of who he is. From the moment he arrived, even when I was slow to bond because of the shock and trauma of those first days, I never once thought of L as anything but my sweet, perfect child. Misfortune had happened to all of us, L included, and it was that misfortune that I railed against, not L, because he was not the misfortune — but how could anyone understand that distinction if they hadn’t experienced it? I have struggled myself to understand how it’s possible to be 100 percent full of each of two emotions that are so strongly at odds with each other you think they might rip you apart from the inside out. How could I possibly put that into words that anyone would understand?

And yet here, on these pages, it is explained perfectly in the simplest of terms:

In retrospect, it’s hard not to note the parallels; the innocent baby who had no idea there was anything less than perfect about his little body; the arduous journey we took before we were able to come home at last; even right down to sewing on a new (Mic-Key) button. Looking at the first pictures of us in L’s room, I can’t help but project Corduroy’s surprise and delight at seeing his new home.

But perhaps most fitting of all was the hand-written note in this particular copy of Corduroy, penned before L even had a name yet, and well before we knew anything was out of the ordinary with this pregnancy. I’m sure I had read and appreciated the inscription when we received this copy of the book, but had not really thought all that much about it, if I’m being perfectly truthful. It’s the kind of sage wisdom that seems like common sense until you are faced with a situation in which common sense is out the window — and then it becomes the thing you most need to hear in all the world.

There, in a dim room in the NICU, in the middle of all the tubes and beeps and pain and fear, when I didn’t know what the future would hold or how I could possibly face it, were these words:

On the anniversary of our 5 years together, L, I am so proud of the kind, compassionate, intelligent, brave person you are becoming. May you grow to climb mountains and explore vast palaces; and no matter how far you roam, may you always come home to a little bed just the right size for you, and friends who love you just the way you are.